A Woman's Journey With Rare Disease

Patient Can Be A Loaded Word

The announcement of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate here for just a moment over this year’s choice of theme & slogan.

While I think the theme is meaningful & they’ve outlined it well as to the thought behind it, I do think that they might receive some feedback that might not be so supportive. The reason I say that is because the use of the word “patient” outside of a doctor’s office has been a point of discussion & it’s sometimes a sore spot for people.

I’ve had this conversation with friends within my own rare disease organizations before. Many people feel that the word “patient” is a label that takes away from them as individuals. They feel they are perceived as tokens, numbers, statistics, or diseases rather than individuals with an illness SECOND but a unique identity FIRST. I understand that & see their point.

Yet, I do see the other side & what organizations are trying to accomplish when they use that word. It’s not entirely inappropriate because like it or not those of us with rare diseases are patients. But in what settings & contexts does the shoe fit?

What’s in a word? Good question. But throughout history, there have been words that have been used in demeaning contexts to keep people down so this point is worthy of discussion & belaboring a bit.

Perhaps I’m hardened to the word “patient” & its use because I play both sides of the field & I encounter it so frequently I’ve become almost immune to seeing it. When I was in junior college training for my associates degree to become an occupational therapy assistant and I was in my fieldwork for that program, I had “patients” in rehab in nursing homes & hospitals. I still saw them as people.

When I was working at Medscape, I worked with doctors, nurses & other healthcare professionals as well as my colleagues on both educational & feature content that was geared towards physicians but also read by their “patients” as a reference or geared to both a professional & “patient” audience. They were still a group of individuals I enjoyed reaching.

Even recently, when I changed sectors & spent two years doing the front lines of customer service for a small self-funded health plan, I’d call provider offices about their “patients” helping with claims questions & other issues. They were clients & customers who I really did enjoy helping.

So the use of the word “patient” is an everyday part of my vocabulary. So much so, I don’t really give it pause.

In my volunteer travels, I’ve met up with members of the Society of Participatory Medicine & eventually became a member myself (as well as wrote a few narratives for their journal). There are a few of us who refer to ourselves as e-patients. Other organizations & members use the word “empowered patient”. So this word is being thrown around a lot with different connotations & meaning to everyone.

But what if you are a person with a rare illness? Or you just happen to be newly diagnosed? Do you want the organization(s) that support you to call you a patient & have the same relationship with you as you would a doctor’s office? This is where the debate begins & gets dicey. Because that’s what many people feel is insinuated when using that word on a website for a nonprofit organization or in their resources.

I know most organizations don’t mean it that way or in that context but some people do get upset & consider it a trigger word.

Mostly because people with rare disease & chronic illness often find in many aspects of their lives defined & labeled by their disease enough. But their disease is not who they are. They are people first with great talents & gifts who just happen to have health issues. They struggle to have aspects of their own life to define themselves & live outside their diseases. If you’re new to your diagnosis you had a clear identity with interests & experiences before this new challenge entered your life.

People with rare & chronic illnesses are often professionals themselves, some work in health, others in media, or other sectors. Even those who are disabled &unable to work or who can’t always articulate their own voice still contribute to the conversation. Still have worth & value as individuals, have goals, dreams, & achievements outside this however-many-letter disease that tries to intrude on their life & test their limits.

At the end of the day, regardless of profession (or even lack thereof), we are all people FIRST, period. We do not want to be defined solely by an illness.

So to balance this out further, when we compare the Rare Disease Day theme of 2015 to 2016, they are both strong but in different ways.

The 2015 theme was “Living With a Rare Disease” & the slogan was “Day-By-Day, Hand-in-Hand”. This was powerful & cohesive. It was universal of the experience of life with a rare disease no matter what your experience was with it.

The 2016 theme is “Patient Voice” & the slogan is “Join Us in Making the Voice of Rare Diseases Heard”. This is much more polished & professional but perhaps appeals more to other sectors NORD is specifically trying to make an impact in & reach — rather than people they serve.

On the plus side, it invokes power because a voice can be powerful & one uses their voice to be heard. The Voice of Rare Disease is one that has struggled for years to be heard & continues to need to be so.

So ultimately, I don’t view this is as negative, just not as touchy-feely & universally appealing as last year’s theme. But some individuals may feel that they feel like “patients” enough in their lives & that the choice should be more inspiring & empowering.

Yet, keep in mind that NORD is a great organization that somehow has managed to unite several different diseases under one umbrella for years & gather them together to make meaningful impacts in important areas like research & advocacy (to name a few).

So I see what they are trying to accomplish with the 2016 theme & slogan. I just think they should also brace themselves for a few potential utterances of constructive criticism over that choice.

I’ll participate regardless & I’ll be interested to see how this all plays out.

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2 thoughts on “Patient Can Be A Loaded Word”

Reblogged this on HealthcareVistas – by Joseph Babaian and commented:
Nikki discusses labels in healthcare within the context of rare disease advocacy. This follows closely from the #hcldr discussion a couple weeks ago, “Names and Labels in Healthcare” that covered this topic in a general sense. Nikki’s work tracks the previous discussion in a wonderful way. Don’t miss reading her superb commentary.